Doing great

Charlie had two doctor appointments yesterday. Both went really well. The first was with Dr Book, his GI doctor. His liver is a bit softer and smaller. Also, his labs look the best they ever have. Total bilirubin is 0.1 and ALT and AST are 30 and 50. I had never thought his liver enzymes would be anywhere near normal. We have been so blessed with Charlie being this healthy.
His second appointment was with Dr. Eborn, his family doctor. He now weighs a whopping 14 pounds and 12 oz. This is still around the 5th percentile but he is growing on schedule so we are really happy with it. Everyone keeps telling us how good he looks. We are even starting to see some fat rolls on him! Yea!! We love fat babies:)

Infection free

Charlie's had a heart echo on Friday. Fortunately there were no signs of infection! Also, later that day he was able to get his PICC line removed. Good day overall. Since then he has been doing really well. He will be off of steroids on Wednesday.

He has been growing quite a bit and is coming closer to catching up with his sis.

Dec 3, 2007

Updates so far: Charlie is still on IV meds and will have his PICC line until Friday. Also, we had to reschedule his heart echo to this Friday as well. Unfortunately, he will have to be sedated for the echo so I am glad he will still have his PICC line. He's had enough IV pokes already.
Overall, he is doing really well. No more fevers and he's been feeling okay. He's still on the small side but is growing and eating well. We are sure happy to have him home.

Sleepy boy

Charlie was able to come home on Sunday. Yea!!! It's so nice to be out of the hospital. I think Charlie was starting to think that it was his second home:)

We figured out that he had got a staph infection, specifically staphlococcus epidermidis. Vancomycin is a really good antibiotic for this bacteria. He had got admitted again the day before Thanksgiving because the levels on his vancomycin weren't high enough to take care of it completely. So his dose was increased yet again. Nick's dad got a chance to talk to Dr Book and she told him that she has never had to give such a high dose to any patient before. It was obvious that he needed it that high though. Just another example of him being a unique little guy:)

Grandma Campbell has offered again to take the girls for a couple days in order to let us spend some time with Charlie adjusting to home. He has been coping okay. He sleeps a lot but whenever he is awake he is always needing to be comforted. I think he is still just a little leary of what is going to happen next. Poor guy, I feel so bad for what he has had to go through. But also very fortunate to have him as healthy as he is, considering his condition.

Thanksgiving

I thought that there was no way I was going to be able to make it to Thanksgiving dinner in Ogden this year because of Charlie being in the hospital. But I was wrong. The nurses that day were not very busy and Charlie was doing really well, so I decided to go for a few hours. It was so refreshing to get out of the hospital and to spend some time with the girls. We all had such a fun time that day. Kayla even got to play football with Nick.

Another day

Well, I lied. I found out today that he is actually coming home tomorrow. Probably. It will depend on how his blood cultures look from today. Also, he is scheduled for a heart echo on Monday to make sure the bacteria is not in his heart. I'll update more later...

Coming home tomorrow

Charlie has done quite good again today. We are planning for him to get discharged tomorrow! We are excited for him to be home but not excited for all the meds he will be on. For the next week or so, Nick and I are going to be crazy busy. Wish us luck with getting sleep:)

Thanksgiving

The doctors have decided to keep Charlie in for at least another day. Although it stinks that him and I are in the hopsital instead of at his grandparents house, I am glad we're are keeping a close eye on him. He is definately becoming best friends with all the nurses and aides. They just love him!

Short visit home

Well, yesterday went pretty good. Some high temps but overall Charlie was improving quite a bit. He was scheduled to get a PICC line in early this afternoon and afterwards we could all come home for Thanksgiving. Our friends Luke and Lauren were absolutely wonderful and chose to spend their day off with us. Lauren kept me company as we waited for Charlie's PICC line and Luke was home with Nick helping out with the girls.
So around 3pm Charlie was ready to get discharged. The nurses set up home health nursing to come and IV therapy to drop off all his drugs at our house. We finally got home around 4 and started making plans to go to Ogden for Thanksgiving but Charlie of course had other ideas in mind. About two hours after we got home, he got another fever. So I called the GI doctor and was told to come into the ER again. It looks like his antibiotic, Zosyn, was stopped too early and he still has some sort of bacteria. The good news is that it still isn't affecting his liver at all.

Red man syndrome

We are beginning to discover that Charlie really is an unusual little guy. A few months ago our friend Joe Hanson said that we should try the lottery and to use any numbers that are associated with Charlie. This is because Charlie has beat the odds in almost everything in his life. First of all, he is a twin, about a 1 in 40 chance, then he gets diagnosed with biliary atresia, a 1 in 16,000 chance of that occuring. In addition biliary atresia is more common in girls and in Asians or African-Americans. Also, Charlie has so far been in the top third of patients having a successful Kasai surgery. Today has shown us that he is definately continuing on in this "beating the odds" pattern. He had been started on an antibiotic called vancomycin late last night and soon after his first dose was started he began turning red. One of the rare adverse reactions to vancomycin is a thing called "red man syndrome" a condition characterized by flushing and a rash that affects the face, neck and upper torso. It occurs in less than 0.1% of the patients that recieve IV vancomycin. Fortunately, it is not a serious side effect and can be treated with benadryl before each vancomycin dose.
Other hospital updates: Charlie was negative for rotavirus. We will get results back to see if it is C diff or not later today. Also, we are still unsure if the infection is cholangitis or not so Dr. Book has said that the safest route is to treat as if it was cholangitis. That means another cycle of antibiotics and possibly the need for another PICC line.
Charlie continues to be such a cute and happy boy during all this. We sure are lucky to have him.

Here's a pic of him and I the day before we brought him into Primary Childrens again...

Back in the hospital

Yesterday, I noticed that Charlie was not feeling well. He wasn't eating and he was feeling really warm. After getting 102.7 for a temp, I took him into the emergency dept. We were concerned that it might be cholangitis, infection in the intestine. However today, after lots of labs, positive blood cultures, high white count and his temp spiking up to 103.3 it looks like he has a staph infection. We aren't sure of the source yet but his liver enzymes and bilirubin are fine, so it is most likely not his liver or cholangitis. The plan is to treat the sepsis with antibiotics and monitor him for a few days in the hospital.
Through all this, Charlie has been such an awesome kid. He has stole the hearts of all the nurses who are always saying what a cute, sweet boy he is. Nick and I have been grateful to live so close to Primary Childrens and so impressed at how caring and kind the medical staff has been. It feels good to know he is in such good care.

Nov 15, 2007

On Monday, Charlie had another appointment with Dr. Book, his liver doctor. It went great. Again, she said we should be thrilled with the results. Not all kids are this fortunate. She also said he is able to stop the vitamin K and to continue tapering off the steriods. So, now he only has meds twice a day. Not too bad compared to 2 months ago. And he is doing so well that she doesn't need to seem him again until February.
On another good note, this morning was his evaluation with DDI Vantage, an early intervention program for kids with possible developmental delays. And, no surprise, he passed with flying colors!!! I'm so proud of my little guy! This is where he is on various developmental areas; gross and fine motor skills-4 mo, expressive and receptive language-5 mo, cognitive and self help-6mo, and of course social/emotional-7 mo. I am always telling everyone that he is such a little flirt!

labs look good

I called to get Charlie's lab results today and they all look really good. His total bili was 0.3, ALT 139 and AST 119. Those are all lower than the previous labs. Also, his stools have been a better color and he is throwing up a lot less today.

Here's a few pics since I haven't posted any for a while:)

???

The last few days Charlie has been throwing up quite a bit. It's fairly large amounts too, like half of his bottle. Normally this wouldn't concerm me too much because sometimes babies just do this. Kayla did for a while as well. But I ended up calling Dr. Book's office because of the last diaper I had changed. His stool color was significantly lighter than what usually had been. It still had some greenish tint to it but it was closer to the color it had been before his surgery. I am hoping it was just a one time occurance because he is doing great with everything else. His eyes and skin aren't showing any yellowness and his belly doesn't seem distended or hard. He is running a really low grade fever of 99.4 but he has done that off and on for a while now. So, just to be on the safe side I called and am waiting to hear back from her. I'll post more after that.

Update: I am scheduled to take him in for labs tomorrow morning. She wants to get a liver panel done to see if any of the enzymes or ggt are elevated.

Nov 3, 2007

Charlie is continuing to do really well. We were so happy to hear that Charlie could finally get his PICC line out. It came out just in time to get him and Hailey dressed up in their halloween onesies and head to the grandparent's house. Him being done with all the IV meds is so wonderful for Nick and I because we can finally start getting some more sleep!
Also, his last labs were even better than last week. Ggt was down to 1269, uncongugated bilirubin an awesome 0.2, and WBC back to normal at 10.6. His liver enzymes were a bit higher than last week but not significantly, ALT 183 and AST 124. I am still amazed at just how white his eyes look. When I look at pictures I had taken of him in August, they were so yellow almost greenish. Poor guy. He's been through a lot these last couple months.
I do need to remember how fortunate we have been to have Charlie as healthy as he is. Our friends Jenn and Justin lost their baby boy, Ian, on Thursday. Ian and Charlie were PICU roomates at Primary Children's after his surgery. Please keep their family in your prayers. Jenn and Justin were such an example to me about how to never lose faith and trust in our Heavenly Father, even in such trying times. They were such strong parents and my heart goes out to them.

Great doctor appointments!

We just got back from Charlie's appointment with his GI doctor, Dr. Book. She said that the surgery is definitly working and that we should be thrilled with the results!! Well, we are thrilled and feeling so very blessed to be among the top 30%! His labs are all looking wonderful except the white blood cell count is slightly high. So, she started him on an oral antibiotic, Septra. Other good news is that we can now start tapering off on some of his meds, including the steroids. And on the 29th of this month we are officially off all the IV antibiotics! Which means goodbye to his PICC line. Nick and I will be so happy to get some more sleep, but Charlie may not be so happy as he has grown quite accustomed and attached to the line:)
Also, he saw his family doctor last Thursday for a well child checkup. Everything looks good. He now weighs 12 lbs which is around the 5th percentile.
All in all, a great week! Thanks again for all the prayers!

A blog for the entire family!!

Everyone keeps telling me that although they love the updates on Charlie, they are also wondering about how the other 2 munchkins are doing. So, here it is!!!!

www.nqcampbellfamily.blogspot.com

Great night!

Surprisingly enough after Sunday's awful night, last night was wonderful! The twins both slept until 5 am. I feel like a new person:)
Nick and I both think that Charlie got some some of stomach virus from Kayla. She wasn't feeling too good yesterday at all. And it wasn't like Charlie to vomit as much as he had 2 nights ago. Poor kids...It is just so sad when they get sick.
Other than that, "our little yellow man" is doing really good. Not yellow at all anymore! He has 2 doctor appointments coming up soon so I will update then...

The Night of Vomiting Hell

Last night began as most of our nights do. Marquesa and I ran around getting all the kids ready for bed after we had celebrated my dad's birthday at his house. We got home a little later than usual, but got Kayla ready for bed and then got the kids tucked in.

Marquesa, being the incredible person she is, sent me to bed around 8:30 pm so I could catch up on a little sleep. This would have been incredible if the night had been a normal one. However, when Quesa finished the midnight IV drugs for Charlie, she came to bed thinking everything would go as usual. Exactly 15 minutes later was when the night really began.

Vomitting followed by screaming quicly awoke us out of our sleep. Marquesa ran into the other room to find Charlie soaked in vomit. He cried unceasingly for the next 20 minutes while Marquesa changed him and tried to comfort him.



This would have been bad enough, but 1:30am rolled around, and the whole process was repeated. This happened again at 2:30 am, 3:30 am, 4:30am, 5:30 am, and then Charlie finally slept until 7:15 am.

I consider myself very fortunate for having an incredible wife as a mother to my children. I am also happy that I got about 5 hours of interspersed sleep, which is probably about double what Marquesa got.

Another month of antibiotics:(

Well, we found out that the doctor wants to keep him on antibiotics for at least another month...pretty much meaning no sleep for Nick or I. But it's worth it if it prevents him getting an infection.

His labs were a bit better this week in terms of liver enzymes, but his white blood cell count was on the high end of normal, which my indicate an infection or it may mean nothing at all. He'll be getting labs done weekly for a while longer.

Please continue to keep him in your prayers.

Lots of smiles!

Charlie is continuing to get better and better. Here is a picture of his scar from the Kasai surgery. It is healing so nicely. Also, we have been very fortunate to have not had a bout of cholangitis (infection). Many kids that go through this surgery get cholangitis at least once. It can be pretty scary if that happens because it can cause septic shock or can cause the surgery to not work anymore, thus needing a transplant. Luckily, Charlie is already about 6 weeks post surgery, so the chance of developing cholangitis is continually decreasing.

Charlie's nest lab draws are this Thursday again. And there has also been talk of this being the last week of antibiotics and his picc line! I should find out if that is the case today or tomorrow.

Keeps getting better...

This weeks labs were great! Charlie's liver enzymes are about the same, his ggt went down as well as his bilirubin. Total bili count is 0.6! Overall, he is doing awesome!

Updates

Hi! Sorry it's been so long since we've posted. Charlie is doing quite well. His bilirubin count is down to 1. And his liver enzymes are going down also. There is one lab value that we were concerned about because it was so high. It was his ggt. Normally it should be around 100-200. It was over 2300 last week and over 2600 this week. His doctor says she has seen it this high before and because the bili count is so good, it is probably due to his medications. We will retest this week, but she isn't too concerned:)
Overall, he is doing really good. He's been eating and growing so much that he has almost caught up to his sister! I saw them the other day talking and cooing to each other. Charlie gets so happy every time he sees Hailey. It is so cute. Kayla has finally learned how to be soft enough with the twins and loves to give them kisses. Although, it is exhausting, we are loving life right now and are so grateful for the blessings we have. Thank you for all the prayers...

Fattening Boy

Marquesa took Charlie in for another follow-up appointment last Thursday. At the appointment they check the usual things (for Charlie). They checked his billy levels as well as a variety of other things including weight. The good news has several facets. Charlies' billy counts are down to almost normal levels. His billy count is down to 1.5 now. A normal count is below one, so we have definetely seen some great improvement.


The other exciting news is how much he's growing. Charlie now weighs 10 3/4 pounds. He's trying to catch up the fatness that is his twin sister. He still has a ways to catch up if he wants to match fat head's (Hailey's) weight.

Before and after pictures

Before and after the Kasai. What a difference in color...
Before:

And after:

Great news!!

With all the research Nick and I have done about the Kasai procedure, we learned this about the success rates. With 1/3 the surgery works and kids never need a transplant, with another 1/3 the surgery works but only temporarily and kids will need a transplant later down the road, usually well after a year or so, and finally the last 1/3 the Kasai does not work and a transplant is needed within one year. Dr. Book said at Primary Chilren’s the success rate is actually around 80% rather than 2/3, which is wonderful! However, because biliary atresia is a progressive and chronic disease, some of those 80% will still end up needing a transplant. There is just not enough research done yet to say any specifics of how many and when.

I went in for Charlie’s appointment with Dr. Book in the liver clinic. I hadn’t had the chance to meet her yet, but I had heard wonderful things from other parents. After looking at Charlie’s labs and hearing that his stools were yellow/green, she said that Charlie’s surgery has worked!! His bilirubin when we first went into the hospital was around 8. Now it is down to 2.2! Also, his conjugated bilirubin is 0.2, within normal limits! His liver seems to be flushing out the excess bile quite nicely. Nick and I are so happy! We have been so blessed to have the support and prayers from family and friends. Thank you all so much!

Awaiting Thursday's doctor appointment

Sorry it's been so long since I have posted...We've been super busy. Charlie is doing great. He is still looking slightly yellow, but the whites of his eyes are much whiter and his stools are looking like they should:) He has also been able to spend some time with his sisters! He has loved that, however it does wear him out quicker. We have an appointment with the liver clinic at Primary Children's on Thursday. Hopefully, they will be able to have a few answers for us. Cross your fingers that he is in the lucky top 1/3 that don't need a liver transplant.

I know we have been posting mostly only pictures of Charlie, but we are in the process of getting a family website. When that is done, I promise we will have tons of pics of all the kids!

We are finally home!!

Yeah! Charlie got discharged from the hopsital late this afternoon. He will continue to be on IV antibiotics for a few weeks. A home health nurse stopped by and gave us a crash course on PICC lines and IV therapy. It sure brought back all the nursing skills that I hadn't used in years.

He is doing pretty good. Still looks a little yellow, but is improving every day. We have our next doctor appointments in 2 weeks. At that time he'll get labs done as well which should tell us if his liver is excreting any bile.

Maybe coming home today!

We are crossing our fingers that today Charlie can come home. He is no longer recieving TPN and is taking his bottles great. He will probably be on a special formula called Pregestimil for quite a while. His labs although still nowhere near normal are headed in the right direction. The nurses have been kept busy by Charlie always wanting to be held:) He's definately a momma's boy!

Here are some pics over the last few days. Rough to realize how much this little man has gone through.

Grandma's lucky day

Yeah!! Today was definately a day of progress. This morning I saw his first smile since surgery! Also, we are finally able to try feeding Charlie. He took 1 ounce at around 3pm and is so far doing great with it. And since she was the one at the hospital at the time, Grandma Roberts got to be the first one to feed him, so she was pretty happy about that. Especially since he rewarded her with lots of smiles!

Yet another day at Primary Childrens

At around noon today, Charlie was transfered from the PICU to the infant floor. He has been recieving TPN (total parenteral nutrition) through his PICC line. A PICC line is like a heavy duty IV line. TPN can give Charlie the nutrition he needs until his digestive system is ready to handle formula.
His bilirubin count is down significantly today but we were told to not get too excited because what counts is long term lab results, not the day to day ones.

Off the vent!

Today was a great day. Even though Charlie was still in the PICU and still on the ventilator, it was good, because he was able to get the amount of pain control that he needed. Yesterday and today the nurses were trying to wean him off the ventilator and were able to around 4pm today. It was so wonderful to hear his cry again.

Aunt Becky's thoughts

When I started this blog I had asked for some stories about Charlie from my sister, Becky. Here's what she's written about the time she's spent with the kids soon after the twins were born.

I was pregnant myself when I heard the news that my sister was having twins. After crossing my fingers that I’d not have the same luck, I checked my schedule. Fortunately, Quesa was due sometime during my second trimester, so I was able to make a trip to Utah in June to help out. I kept praying that she wouldn’t have the twins until I got there. Maybe I shouldn’t have prayed quite so hard; it took a week and a half after my arrival for the little ones to show up. :) I vaguely remember Quesa and Nick heading to the hospital at sometime in the wee hours of the morning on June 16, 2007. My mom told me later that she didn’t sleep a wink for the rest of the night; she was waiting for that phone call. I, however, quickly drifted back into a pregnancy induced slumber. In fact, at around six thirty when the call came and mom told me to get out bed pronto, my first thought was, “Are you kidding me? Get out of here before I chuck a pillow at your head, woman!” That thought was quickly followed by a brief sense of guilt for disrespecting the woman who gave birth to me, and then immediately pushed aside by the most important thought of the morning thus far: “Babies!!”We high tailed it to the hospital, where I got my first glimpse of Hailey Marquesa and Charles Nicholas Campbell. I refuse to admit that I played favorites on the grounds that I might incriminate myself, but there was no doubt that as soon as I saw him, I felt a special connection with Charlie. Maybe it was all the comments about Hailey’s beauty (with which I wholeheartedly concur) that made me think he needed a little extra love. Maybe he took me back to that moment more than three years ago when I held our little Riley boy in my arms for the first time. Or maybe it was as simple as middle child bonding syndrome. Whatever the case, I fell in love. Everyone teased me about playing favorites and I guess they assumed that if I was going to hold, feed, or change one of the twins, I wanted it to be Charlie. So they started leaving Charlie for me. The more time I spent with him, the more I liked him. My heart broke this month when I found out that he’d been hospitalized, but I know that everyone is going to have different challenges in this life. Whatever happens, I hope he knows that he’s got an aunt somewhere in Alaska who’s rooting for him and who thinks he’s one special kid.Disclaimer: I had to steal Hailey a few times to let her know that Aunt Becky was head over heels about her, too. And don’t even get me started on Kayla. I mean, look at the girl! She’s adorable, she giggles all the time, she eats green beans without complaints, for crying out loud - what’s not to love?

And another few thoughts about her son, Riley's, reaction to hearing about Charlie's illness.

From the moment Adam and I heard that Charlie was in the hospital, his name started popping up in almost every prayer we uttered. I didn’t know if our three-year old, Riley, remembered who Charlie was, even though we’d mentioned him before, so I pulled out a few pictures to remind him. I told him that Charlie was sick, and when Riley wanted to know why, I explained that one of Charlie’s body parts wasn’t working like it was supposed to. I think that Riley had hurt his knee earlier that week because he asked, “Are his knees okay?” After talking a little more, I let him know that his Aunt Quesa was going to call us later and tell us how things were going. He looked up at me with those big brown eyes and said, “Then everyone will be happy?” I could only choke out, “I sure hope so, buddy.”
Then a few days later, Riley asked to say the prayer at bedtime. Amidst thanking Heavenly Father for his cars and his bed, he said, “Please bless Charlie that she’ll get better.” I was tearing up and trying not to laugh at the same time; it was touching to know that Riley wanted to pray for Charlie, too, but my nephew had just been called a girl! What to do? I settled for giving Riley a big hug and wished I could do the same for Charlie.

The big day

Or as Nick keeps reminding me: step one of 493. We checked into the hopsital at 10:15am. The surgeon, Dr. Scaiffe answered any final questions and told us to expect the surgery to last 4-6 hours. We said bye to Charlie and prepared for the long wait. After a few hours, they called to let us know that he indeed did have biliary atresia and that they would procede with the Kasai. around 5pm Charlie was out of surgery and admitted to the PICU (pediatric intensive care unit). His nurses were wonderful. Between Nick, myself and grandparents, Charlie was never left alone.

To learn more about the Kasai surgery: http://www.clarian.kramesonline.com/HealthSheets/3,S,88701?PrinterFriendly=true

Are you sure about this?

Being home from the hospital, we were almost able to feel like normal again. There were even a few times that I forgot Charlie was actually sick. We have been so grateful for all the prayers from friends and family. Tomorrow is Charlie's big day. Wish us luck!

Going home!

 
Charlie had another day of relatively few pokes and prods. He was also able to hang out with his grandparents and his twin sis. We learned more about the Kasai procedure and were able to leave the hospital that evening.

Happy again

The last two days were miserable for Charlie.

He had cried so hard that he became hoarse :( Today was much better though. No tests and procedures for a bit. We were even able to get some smiles!

Diagnosis

Today was another day full of tests and questions. He underwent a liver biopsy to narrow down possible diagnoses. Dr. Jackson is pretty sure Charlie has biliary atresia. Here is a good website to learn what biliary atresis is: www.classkids.org/library/biliaryatresia.htm

Something's wrong...

I took Charlie and Hailey to their 2 months check ups thinking everything would go smoothly. But, his family practice doctor, Dr. Eborn felt like we needed to get some lab tests done on Charlie because he was looking so yellow. I took him in for labs, then when I was called with the results, they said to take him in to the ER at Primary Children's Hospital immediately. He was submitted to even more tests and then admitted to the hospital. It was then that we met Dr. Jackson, a pediatric GI doctor. I stayed with Charlie that night.

Welcome to our family!!!

Charlie was born happy and healthy at 4:43 am.